For WellBeing reader Sarah Rosenberg, living with a chronic illness means navigating daily life in survival mode. However, along with exhaustion, burnout, and constant renewal, he has one constant drive: the desire to create meaningful systems to change the world around him.
Trigger Warning: This story contains themes that may make some viewers uncomfortable.
Third child, too many, a daughter with an autoimmune disease and chronic illness, I never thought I would be a victim of domestic violence. It’s a term I’ve reserved for vulnerable women. I didn’t think the victims looked like me. But abuse doesn’t care if you come from a loving family, are outspoken, or aren’t the “type” for a man to treat you badly. Sometimes it comes through jokes that bite, slamming doors, putting on a bad day, the compromises you make to keep the peace. Sometimes it’s sudden, violent action you’ve never seen before. However it finds you, naming it swallows you like glass. Suddenly, you are a statistic that you never imagined.
I was “almost better” when I was raped. After a decade of misdiagnosis and medical dead ends, I was given a specialist for my 23rd birthday. My father called the clinic every day until Dr. Richard Schloefel finally opened his books for me (probably just to stop the phone calls) on the condition that I join his latest medical trial for myalgic encephalomyelitis (ME/CFS). I cried. It was the best gift I have ever received.
I was not open at first. I have been disappointed many times, my hopes dashed with each failed treatment and each questionable doctor. It took years to “get” a diagnosis: incurable, understudied ME/CFS. Cynicism became my armor. But Dr. Schloeffel moved quickly and surgically removed the two insidious biofilms lurking in the door. Recovery was also quick. The fog cleared, my weight doubled, and the defining symptoms of ME disappeared. But it didn’t last long, because he took another cunning thing into his hands.
Abuse doesn’t just leave scars. It explodes in your nervous system. After the attack, my immune system collapsed and my depression and PTSD symptoms increased. Joints ached, fevers flared, and bone-deep fatigue returned, throwing the body I was only trying to trust again after chronic illness back on track. I’m back to square one: emergency visits for the common cold, brain fog so thick I can’t remember what the day was like, finding out the hard way that seeing a friend and grocery shopping in one day is, in fact, too much.
Only this time I woke up to everything, shaking off the oversleeping that was protecting me from the worst. I was awake and it hurt. I felt every stomach spasm, every jolt of nerve pain, until the pain in my skull emanating from my swollen brain felt like my body’s own protest against being awake. We started looking for a brain tumor.
I moved very quickly – the orchestra before school, then sports, then I changed coins in the car when I rushed to the ballet. I thought healing meant getting back to that version of myself. But he no longer exists. This – this broken body, this damaged nervous system, this pain – I am that person. Healing, I realized, is not going back. It’s about the pain and resilience of the person I’m still becoming.
When I sought treatment for abuse, the first thing that came up was non-violence. It was a disease. The shame of doubt connects the two – disbelief had a history. I now understand that our bodies do not distribute traumas accurately. It’s all a nervous system.
It wasn’t just an attack. That’s what I was working with. Because then, in the midst of all the physical devastation, I was navigating a justice system that wasn’t built for victims, let alone patients. So I entered the bar. I started With You We Can, the first resource center for victims of the justice system.
For the first time since my abuse, I had purpose – but it was worth it. The conversations, the revelations, the relentless struggle against indifference kept me in a state of extreme alertness for years to come. The thing that helped me made me sick.
Advocacy and Chronic Illness: Equal Parts Grit and Grace
Making a donation while living with a chronic illness is equal parts honor. There’s the admin no one sees—the grant writing, the spreadsheets, the nightly emails—next to the emotional labor of relaying the stories of others while still healing yourself. There is a sensitivity to sharing your truth, even when it consumes energy that you don’t have.
And then there are the victories—the reform of the law we pushed through, the message from the victim who says she sought help because of my website. But advocacy is not a straight line to victory. Those days are ringing when your body wants nothing more than bed. It smiles through public displays and wonders why lights and noises cause fire.
Dynamic handicaps are easy to gaslight even by ourselves. On good days, I wonder if I’m just lazy, if I imagined yesterday’s pain. On bad days, I look for signs of progress: painfully sitting through dinner without distraction, two hours straight in the same class. Is it a cure or just extreme tolerance of chronic disease for suffering?
My sister once said, “Maybe you don’t need to count on it all to go away. Maybe you just need to count on the good days more than the bad.” That stayed with me. It is a kind of quieter hope, not to return to the situation, but to make peace with it.
Finding a way back to normal after a trauma is not easy because it changes everything. It completely separates us from what we were, so that there is no way back. It’s not about starting over, it’s about recognizing that what can’t be started over. Letting go of the fragile things in the world is a radical act that teaches us to let go of our sadness. But some things cannot be fixed, they can only be carried away. Maybe that’s all healing is – learning what we can’t fix. Although it takes time, our hearts build new life in this changed terrain. Little by little, pain and love find ways to coexist. But both will always be true.
Chronic illness does not stop the fight for change
I am proof that the body in survival mode can still make a difference. But only if we stop defining burnout and start building sustainable ways of doing it. Only if we all learn to say “I’m not qualified for this yet” and stop apologizing for it.
We need systems that trust victims the first time. We need prevention before the headlines force our hand. And we should care about the people who work – not glorify their sacrifices when they quietly open up.
Because the truth is, I’m tired. My body is tired. But I still believe in the possibility of something better. Not just for the next victim, but for the person I am still becoming. Sustainability is not a luxury. It’s the only way each of us will survive long enough to build the world we deserve.
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